ME: A Hidden National Scandal

Given the state of ME/CFS 'research' and 'treatment' in the UK, this article is reassuring...

ME: A hidden national scandal
Written by Sue Stockton
Thursday, 11 May 2006

So-called 'yuppie flu', ME, continues to be ignored by doctors despite evidence it exists and is spreading. Here, a sufferer's family shares their story on the eve of ME day...

In July 2005 a campaign was launched in Hampshire to protest about the opening of the latest of the new "ME/CFS clinics." The protest was led by a sufferer and a parent who cares for her severely ill daughter.

Both were horrified that this was one more step on the road to psychiatrists claiming this illness, Myalgic Encephalomyelitis (ME), as their own, thus denying proper treatment to seriously ill people.

They point out that bio-medical research grants have not been awarded whilst the psychiatric-based interventions have had government funding to the amount of £8.5 million for establishing NHS Regional Clinics and £2.6 million for the PACE and FINE trials.

The “Pacing, Activity and CBT: A Randomised Evaluation” (PACE) and the “Fatigue Intervention by Nurses Evaluation” (FINE) trials are both psychological/psychiatrically-led trials involving Graded Exercise Treatment (GET) and Cognitive Behaviour Therapy (CBT) which apply specifically to ME These are potentially harmful to anyone with classical neurological ME, as defined by the Canadian Criteria, since forced exercise can exacerbate cardiovascular problems.

These techniques are practised through the new ME clinics.

On 4th July 2005 in the USA, a 23-year-old man called Casey Fero died of ME, which is also called Chronic Fatigue Syndrome (CFS). He had suffered with the illness for at least 14 years.

In that time he had coped with the ignorance and disbelief of doctors and teachers.

The pathologist at the University of Wisconsin reported at the end of July 2005 that: “Casey died of myocarditis: that is, his heart was infected with disease. There was inflammation, and the tissue was full of viral infection. Casey also had old fibrosis, indicating that the viral infection was not of a new onset.”

Casey’s death is extremely worrying for ME sufferers like Lauren Waddle and her family.

Lauren, and thousands of other severely affected ME sufferers like her in this country, has experienced the same symptoms that Casey had exhibited during his illness.

Lauren first became ill in September 1997 with an initial diagnosis of Glandular Fever. Instead of recovering, she gradually deteriorated in health. This deterioration was exacerbated by inappropriate advice and expectations from Health and Education officials with no understanding of the illness ME Eventually, even after gradually reducing her school timetable and giving up all extra–curricular activities, it became too much to attend school for even short periods.

By the age of 15, Lauren was virtually bed bound and terribly isolated. A major symptom of ME is body clock reversal and sleep disturbance, which meant that sometimes Lauren could not get to sleep until 6am and then woke only in time to have home tuition after 4pm. However, by sheer determination she managed to attain five A* GCSEs over three years.

By the age of 16, she could only make occasional trips out for very short periods. She and her parents considered it a good week if she spent 20 minutes in the library and visited the doctor. Now, at the age of 20, even such activity takes a real toll on her and sometimes she doesn’t leave the house for weeks at a time.

Wherever she does go out she needs a wheelchair and, of course, a carer to push her. The isolation this illness fosters cannot be underestimated.

Lauren has no siblings and, perhaps understandably, only one friend from school keeps in touch. Her parents have seen their once bubbly, confident, extrovert daughter reduced to someone who has missed all her teenage years living in pain, with dizziness, muscle-weakness, nausea, “brain-fog”, sleep-disturbance, temperature control problems and, last but not least, overwhelming fatigue.

As her father, Nigel, says: “To have to bath your 20-year-old daughter and carry her upstairs to bed is heartbreaking. To have doctors tell you that it is “just ME” is insulting!”

He and his wife Sue are increasingly worried about the long-term effects of this illness upon Lauren’s health and are campaigning for greater awareness amongst the public and the medical profession.

Sue says: “We have had a doctor tell us that Lauren needs to have a 'can do, not a can’t do, attitude'. That man knew nothing about my daughter or he would have known that you would never meet a more positive girl. I hope he hangs his head in shame when he eventually educates himself to the reality of ME and its physiological basis. I aim to educate him!”

Professor Malcolm Hooper of the University of Sunderland says that the treatment (or lack of it) of ME sufferers in the UK is a national scandal.

In a synopsis of the problem for a proposed UK Parliamentary Inquiry into the illness he says that it is time that the School of Psychiatrists who perpetuate the myth that ME is a “non disease” are held publicly accountable.

ME has been well-documented in medical literature for over 60 years. It was extensively documented and named by Dr Melvin Ramsay, the Honorary Consultant Physician at the Infectious Diseases Department of the Royal Free Hospital in London for many years.

He was a clinician at the Royal Free Hospital when a mass outbreak occurred in 1955. Before his death, Dr Ramsay, echoing the sentiments of Professor Hooper, wrote: “The too facile assumption that such an entity - despite a long series of cases extending over several decades - can be attributed to psychological stress is simply untenable.”

ME has been recognised and classified as a serious neurological disorder by the World Health Organisation since 1969. Professor Hooper points out that most experienced ME clinicians accept that some degree of encephalitis has occurred in patients with ME, leading to damage of the brain stem.

In ME there is evidence of disruption in ion channels in the cell membranes; such changes in ion channel function, found by Dr Abhijit Chaudhuri, offer a rational basis to explain the fluctuating symptoms experienced by ME sufferers.

Such ion channel changes are known to be induced by physical activities, stress and fasting and these ion channel abnormalities in the myocardium may form the basis of cardiac dysfunction in ME sufferers. It is also known that some enteroviruses are implicated in ME and are known to damage the heart muscle.

Dr Vance Spence of Dundee University has also proved that free radical damage in the endothelium can adversely affect all major organs. These three separate studies show how patients with ME can suffer multi-organ damage.

There are thought to be about 250,000 people in the UK that sufferer with ME, of which a quarter are severely affected, like Lauren.

However, it is hard to know any statistics for certain, as there is no Department of Health (DoH) agreed rigorous diagnostic criteria and the DoH refuses to collate statistics. So why, with such overwhelming international evidence of serious organic pathology is the government so keen to listen to an influential group of psychiatrists who advocate Cognitive Behaviour Therapy and Graded Exercise Treatment for ME patients, delivered through a network of new ME/CFS clinics?

The government has spent £11.2 Million in establishing these “centres of excellence” which can deliver nothing more than glorified coping strategies. Could it be that to acknowledge the extent of this dreadful illness would mean having to do something about it and invest money in bio-medical research to find causes, cures and treatments?

When US clinicians and researchers show that patients with ME are in effect in cardiac failure, not through the obstruction of the coronary vessels but because of mitochondrial dysfunction, which affects muscles, including the heart muscle; why are patients’ lives being put at risk by the prescribing of Graded Exercise “Therapy”, which could be life-threatening?

In desperation, Lauren’s parents have now formed a charity with other carers and sufferers to force a rethink by the medical profession and the government.

They have arranged a major conference for 12th May 2006 – ME Awareness Day - and have gained professional accreditation from Royal Colleges for doctors wishing to attend to gain Continuing Professional Development points.

The speakers are eminent figures from the ME world that can assert the physical nature of this dreadful illness and provide overviews of the current, limited, research.

Dr Ian Gibson MP will also present an update on his forthcoming inquiry into ME If this illness had been given the priority it should have received many years ago, instead of being denigrated as “Yuppie Flu” then perhaps a young man named Casey may have been alive today and Lauren, and many thousands like her, would not have to exist in a state of anxiety about their future.

It is time that rigorous scientific evidence was considered by doctors and politicians over the non-scientific prognostications of a psychiatrist who asserts that “ME is simply a belief, the belief that one has an illness called ME”.

Yes, it is criminal medical negligence. It will not change until we hold our elected officials accountable. Maybe mass-action lawsuits against them would help?

But then again, someone like the CDC and/or NIH would come up with something like their last gene study (which, BTW, IMHO), which really proves nothing, says nothing, new.
And that would be their answer to any lawsuit(s).

I don't really have any answers. It seems like no matter what illness we have, the establishment want us to diagose ourselves, research the illness, then tell them what meds we want, right?

Thanks for posting the above article - it's so good to hear that it is finally sinking in that psychiatrists are hijacking millions of pounds of funding that should be going into finding a treatment for a physical disease. By circulating the myth in the media that this illness is "all in the mind" they have diverted funding for themselves when it should be going into proper biochemical physiological research on the cause and an effective treatment.

How the heck have psychiatrists managed to get millions of pounds for dishing out "do gradual exercise, you are unfit" and "you are imagining it lets talk it through"!? By making out we are crazy, that's how.

When I first became ill I tried to ignore my symptoms and tried to build myself up with some exercise - it's called BASIC COMMON SENSE. Unfortunatley it didn't work so THEN I went to the doctor.

Becc, I was just wondering - where was this article published? Was it in the national press?

I am not aware of exactly how the UK system works, and even your terminology and things are different.

When I read UK Anesthesia studies and books, it drove me nuts.

However, the CDC study is VERY BIG TIME VERIFICATION.

My new doc, who is very, very respected on FM, CFS, and AIDS, says it CLEARLY DEMONSTRATES THAT THERE IS A BASIS FOR THE DISEASE, A SERIOUS DISEASE, AND THE NEXT STUDY SHALL PUT IT IN THERE AND IT SHALL BECOME IRREFUTABLE.

i live in the uk,and suffer from fibromyalgia and chronic fatigue syndrome.ive had these illnesses for nearly 12 years now.

i was able to get the high rate mobility award,and was due to re apply for my second middle rate care award,when i was sent to what they call over here in the uk..a fibromyalgia pain management course.

the course was to be attended each thursday morning for 2 hours.and this was a 10 week course.my rheumy sent me there as i was having problems with my spine seizing up and my husband had to help clean me up at the toilet, as i couldnt reach my bottom due to severe stiffness and pain.

i had told my doctor just a year before attending the course that i was having episodes of severe chest pain,the pain was a though my chest was being crushed,id fallen onto my bed and couldnt move,or shout for help.

i told the doctor i was very frightened and hoped it wouldnt happen again,and could she tell me what had caused it to happen?to which she answered..you have fibromyalgia dont you? well after listening to what you have told me..this is not a heart attack,but it is a panic attack.these are due to your fibromyalgia syndrome.

so here i am at this pain management course,being put through vigourous excersize.yes it was slowly increased.but we were told in a school matron manner,that we must go home,do these excersizes every day and fill out a progress report.

the following week our progress sheet was talked about in the group,and we who admitted that we had had a few days bedbound, due to our body being so fatigued by the excersize regime that it had,SHUT DOWN.well we were shown up in front of the rest of the group,and made to feel guilty for not.DOING AS WE WERE TOLD.

i made a complaint to the hospital manager about how i felt my body was taken beyond its limit,and felt bullied.she just said..well you were warned that excersize can crash your body,so you cant say we didnt make you aware of what would happen.

i still have strange things happening in my chest,i sweat alot from my face when i walk or climb stairs.im not over weight and not idle.yet still my doctor says theres no need to get me checked out for heart problems,because there arent any.its just panic attacks.

as i type this to you,im insisting next week that i have the correct heart tests done,because im worried,and im not just a fibromyalgia sufferer..im a human being..so treat me as one.

i believe very strongly that we sufferers should not be bullied into over doing excersizes at these pain management courses.

put the money into research of our illness,and stop trying to kill us all off with excersizes that are too demanding.

and by the way,after i finished my 10 week course,the social stopped all of my dissability awards,and said..now that you have attended the pain management course,you no longer qualify for the dissability awards..just another way to get people off benefits?

Dr Myhill here in the UK can test for Mitochondrial Failure (the cells that produce chemical energy in the body)in ME which affects the muscles, heart and many other organs.

Google and you will find her webpage - it costs a bit but I felt worth it to prove there is an underlying biochemical block which means the body cannot produce physical energy, and causes an accumulation of lactic acid (pain)

It may be worth getting the test done, Dr Myhill is trying treatments for it which offer some hope.

Hi Smiffy, I'm not sure the driving issue is that cut and dried. I have epilepsy (chronic/incurable), but I still have the DVLA's permission to drive, having met certain safety criteria.

I think it's unlikely that action would be taken against a CFS or FM driver. After all, if a government body started banning us for having a "neurological condition" then they might have to start treating us for it - and they aren't likely to do that in a hurry! Much easier to stick with the tried and tested psychological approach and not rock the boat.

I've never heard of anyone having a problem with their driving licence because of FM or CFS. Anyone else?

Very good article! The theory of exercise for ME/CFS/CFIDS and Fibro sufferers flies in the face of all the research, and is debunked by our own experiences such as Fran describes in her post above.

The fad for these absurd exercise clinics is very dismaying, because it appears that some lobbyist has caught the ear of someone with the power to divert funding to it - funding that could be used to *gasp* actually come up with some relief for ME/Fibro sufferers.

I hope the ME Associations in the UK begin campaigning vigorously to stop this trend, and I hope individuals will pepper their representatives with letters, emails and phone calls of protest.

Thank you SO much for posting it! With all the flack going around about this disease, sometimes I find it hard to believe myself that my symptoms are real. That all these people in the UK are being brainwashed into thinking they are psych cases is disgusting beyond belief.

That part in the article about the girl Lauren is so exactly like me. I HAVE had to be carried to the bathroom, and have serriously contemplated having family members bathe me. What healthy OR faking OR mentally ill person would WANT a family member to bathe them??? No one would! I sure don't. That she can have exactly the same symptoms as me half way around the world reafirms to me that my disease is real.

I liked the explaination too about what ME is, about the mitochondria and a viral infection connected with brain and organ damage. It explains why some people are so severely affected, while others get well again, and others fluctuate. I'm relieved that there are people doing research on this. I'll keep the article in my archives, and give it to my family too.